Towards the end of last year, I read in the news that a woman called Debbie Purdy had died, following a lengthy battle with primary progressive multiple sclerosis (MS).
She had made headlines and earned the respect of many because of her challenge to the law in England and Wales on assisted suicide. Debbie believed she should be allowed to choose when she died, and incredibly, won a landmark ruling to clarify the law on assisted suicide.
MS was a disease that Debbie had been living with for almost 20 years. It all started in 1994 when Debbie was 31. She was working in Singapore as a music journalist when she first noticed that she was becoming tired more easily, and that her co-ordination was occasionally a little awry. At the time she put it down to the thrillseeking lifestyle she’d been living, globetrotting around the world and regularly diving from planes or under the water, or white water rafting.
‘‘To be honest, I thought my body was reacting to all the emotional trauma I’d been through,” Debbie once said in an interview. “Looking back, it was the beginning of losing my motor skills.’
™I had appointments with a neurologist and a psychologist, absurd as that might sound. I thought I just needed counselling.’’
She was utterly stunned when she was diagnosed with MS shortly afterwards.
“I couldn’t take it in,” she remembered. “I had thought maybe I had a benign brain tumour, that I would have an operation, but that ultimately, my life would return to normal.”
But fate had other plans, and so began a painful, debilitating journey which required Debbie to rely on a wheelchair for mobility, as well as coping with both her sight and hearing deteriorating.
“It’s painful and it’s uncomfortable and it’s frightening and it’s not how I want to live.
“If somebody could find a cure for MS I would be the first person in line. It’s not a matter of wanting to end my life, it’s a matter of not wanting my life to be this,” she said.
When Debbie died just before Christmas 2014 at the age of 51 after refusing to eat, reading her story again made me want to look at MS in more detail and I wondered whether it affects men and women equally.
MS affects more women than men, and it is most frequently diagnosed in women in their twenties and thirties.
Out of the estimated 2,500,000 people that MS affects worldwide, it is two to three times more common in women than in men.
MS affects nerves in the brain and the spinal cord, causing a wide range of symptoms including problems with muscle movement, balance and vision. Each nerve fibre in the brain and spinal cord is surrounded by a layer of protein called myelin, which protects the nerve and helps electrical signals from the brain travel to the rest of the body.
In MS, the myelin becomes damaged which in turn disrupts the transfer of these nerve signals, causing a wide range of potential symptoms, including a loss of vision, spasticity, difficulties with balance and co-ordination, and fatigue.
The disease is most commonly diagnosed in people aged 20-40, despite the fact it can happen at any age and children can also get it, although this is rare.
And while it’s not strictly an hereditary disease, there is often an increased chance of MS developing in the close relatives of affected people.
MS affects different people in many different ways. This means that it is very difficult to predict the outlook for people with it. There are currently no tests to predict how MS will progress in a person but most people are able to continue to walk and function at their work for many years after being diagnosed.
Some people with the disease do become disabled over time, and a small number become severely so.
However, there is much research being conducted into finding newer and better disease-modifying treatments, so hopefully things may well improve in the future.
In the meantime, a number of self-help groups currently exist to bring MS sufferers together, helping them to share common life experiences for support, education and mutual aid.
Joining groups like this can help MS sufferers feel empowered and more self-confident in coping with the challenges they face in their everyday life, as well as enable them to learn new information and coping strategies, and give them the opportunity to help others.
It would be great if Debbie Purdy's legacy enabled more awareness of this challenging disease.
- If you have MS and are interested in finding a support group near you, visit www.mssociety.org.uk/ms-support.